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againx100 Asked June 2022

This may be a hard question, but how do I determine what level of care my mom needs?

I am getting very close to finding mom a place to live that is not in my house. Between dementia and incontinence, it is getting very difficult for me. But it just does not seem like any level is really the right fit currently. When she gets a little bit worse, yes, but not today.


IL, no way.


AL, doubtful. She has mild maybe getting close to moderate dementia. She needs medical help, prompts for many/most things, bladder/incontinence issues, etc.


SNF, seems too with it for this?


MC, kind of, but it seems like most in MC are of the more severe dementia type and that would not be a good fit while she is not in that category yet.


It may seem like I'm making excuses, but it just doesn't seem like anything fits.


She is 79 and continues to decline. She has a hard time remembering what to do. Can't retain info that she's told and therefore asks the same questions about what/when/who. She used to read a lot but is now having a hard time following books. Used to play a lot of cards but can't remember the rules and needs nearly constant prompts to play.


I know a facility will be happy to help me figure this out, but I don't know if I'm ready to sit down with someone because I feel the pressure will be on to make it actually happen. I don't want to be pushed into it. Just trying to mentally prepare for the rather inevitable.

lealonnie1 Jun 2022
Look into Assisted Living with Memory Care attached. That way, she may be able to start out in AL and segue into MC when her dementia demands she get extra care and locked exterior doors. That's your best bet. I doubt you'd be pressured into placing her by visiting a few places. In fact, there may be a waiting list for the one you like best so.....

Also, its not up to you to determine what level of care mom needs. The AL would do an assessment and make that determination for you.

Good luck!
againx100 Jun 2022
Thanks Lea. In this situation, if they go from AL to MC it's still moving to a new room with new caregivers, etc.? Waiting lists are somewhat common, I guess. Good point that they'll decide what's appropriate for her. I just wanted to look in the right place. I'm trying to hold on for a bit and by the time I'm DONE, I'm pretty sure MC will be the right level.
Geaton777 Jun 2022
If you don't feel you're ready to transition her out of your home, have you tried hiring a companion/aid for her a few days a week to give you a break and just easy out of it more slowly? This may provide enough of a "bridge" before you feel more comfortable and ready for a bigger change. I wish you much widsom and peace in your heart on this journey.
againx100 Jun 2022
I have a lady coming here 4 days a week for 4 hours. Often I am out babysitting for by grandkids and other times I'm around the house doing my own thing without interruption.

Just this past weekend I had someone come in on the weekend so hubby and I could go out to a birthday party and a wake. It was nice not to have to worry about what she was up to and if she were having a good day or a bad day cognitively.

Oh boy, I could definitely need much more wisdom!

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MJ1929 Jun 2022
Find a memory care that separates the residents in regard to their level of cognitive abilities.

My mother's MC had three levels of care -- very independent, mid-ground abilities, and low abilities. She started out with the mid-range residents which made up the majority of the people there. They could feed themselves, participated in activities, and could come and go to their rooms or some needed a higher level of physical care like my mom who was wheelchair-bound and incontinent. They were all in the same enormous common room, but one group was at one side of it, and the other was on the other side. The independent folks had their own private room with a TV and coffee and such, but they were free to come and go throughout the facility.

Mom never really participated in the activities all that much -- more due to her vision and hearing issues than her level of cognition -- but the caregivers kept her in the common room all day with everyone else, because just being around the activities and other people was stimulating for her. In the last months of her life she was with the lower-level folks because she was sleeping a lot more and really wasn't eating on her own any longer.

Don't look at memory cares just from the outside. Really tour the places, ask if they have different levels of activities, and see if they just keep everyone together or not. I looked at a couple of other places for Mom where everyone was bunched in together -- including a mentally disabled younger woman at one place(!) -- and they were clearly catering to the lowest common denominator in that they parked everyone in front of a TV. My mother's place only turned on the TV for a half hour after dinner each night, and otherwise they had a different activity every half-hour or 45 minutes to keep things lively. It was an excellent setting, and they were able to care for her all the way until she died.

As long as there's any dementia beyond the very earliest stages, I always recommend memory care because they know how to handle dementia patients and it's so very much more than merely doling out pills and helping people with dressing and showering like assisted living, plus people with dementia don't make friends in AL as easily, if at all. Skilled nursing is for patients who are largely bedbound or wheelchair-bound and can't really do anything, including activities. My mother started in SN (a long story), and it darned near killed her because she was neglected. She wasn't sick and incapable of doing anything, so they didn't really pay attention to her. She had dementia and heart problems, but everyone else in there had had strokes or was rehabbing from surgeries.

I really recommend contacting APlaceforMom.com. They were invaluable in helping me find the best match for my mother with her memory care place. You'll get bombarded with phone calls from various places at first, but it gives you a list of places to check out. Once you tell them to stop calling, they have to stop, and they do.
againx100 Jun 2022
Thanks so much. I didn't know that they could separate according to their abilities. Duh. Makes perfect sense. I know a very nice place near me but I don't think they separate and therefore would not be a good fit. Now I need to do a deeper dive.
Sohenc Jul 2022
As other have noted, this is very hard. But also looking ahead at what she will need and how it will be paid for is good to consider. Some facilities have it all in one place: Nursing Home and MC so one could start out in the NH and move to MC. These facilities often are Medicare and Medicaid qualified, look for that if at some point her resources will likely be depleted and Medicaid "long term nursing home coverage" will likely be needed. Moving within one facility rather than moving to another facility later is often so much easier, easier on the LO too.

One key question is (for you and a geriatrician, good to establishing a relationship with one over one's general primary care MD), is she "safe" and which ADLs or IADLs can she do fully independently not and what is likely 6 months from now or next year? The more she cannot do safely, independently and consistently (toilet, transfer, manger her on Rx schedule, shower, dress, clean, cook, walk, make sound medical or financial decisions) and what medical conditions does she have, more serious then more need for RNs and MDs on site; the more Nursing Home and perhaps MC is needed.

My 85 year old mom has dementia, but often sounds and is quite lucid. She easily gets confused, confabulates (makes up, fills in gaps in memory often with totally made up stuff), has a host of behavioral issues and many medical conditions; and basically is bed bound (she can w/lots of effort walk about 10 feet with a walker)... but it is totally unsafe for her to shower on her own or do much of anything on her own. So a nursing home, with a MC "wing" when/if needed, had to be my choice and one that Medicaid covers as at $15,000.00 per month she blew through what little money she had the first 6 months. But private pay got her into a quality facility and there was no need to move her to another place later, thankfully.

Good luck with this. This is so hard.

Fawnby Jun 2022
She is continuing to decline, so she will fit the MC category sooner rather than later. Better to go that route than to have to struggle with the same sort of decision a few months or a year from now. She won’t really understand the differences anyway. Sorry you are going through this. It’s never easy.
againx100 Jun 2022
Thanks for your great answer. That's kind of what I was thinking too. It would be bad to have to move her after a shortish period of time.

You're right - this is NOT easy.
Sendhelp Jun 2022
Start by asking what Mom wants. Be aware that some people do fall between the cracks of the system. An ideal setting is not always possible.

You may benefit from hiring an Aging Life Care Coordinator in your area.

Other names are a Certified Care Manager.

Advocacy, Assessment, Crisis Intervention, Care Management, Consultation, Counseling, Education, Entitlements, Guardianship/Conservatorship, Information/Referral, Placement.

There should be no pressure. It really is okay to care for someone at home, as long as you are able and willing, and get the help that is always required because no one can sustain care for 24/7 alone.

Adding, but not accusing you, it is important to not get Caregiver Burnout, Compassion Fatigue, or be in denial.

A professional Aging Life Care Coordinator or Manager can also make an assessment of the caregiver's resources and needs.

It is good that you asked here, ahead of that time, before a crisis determines placement for your Mom.
againx100 Jun 2022
Thanks. What my mom wants is to stay here. But it's very difficult and on bad days, I feel like I just can't take it anymore. Then, things level out and it's semi-tolerable.

Burnout and compassion fatigue are real and I'm sure I have a bit of each.

I do have some aides and am increasing it.
KPWCSC Jul 2022
I found visiting facilities when I know I can still handle things at home to be the best time to visit because if they try to pressure their services, it is easier for me to say no. As with any major decision, I always state I never make them without considering my options for a day or two. Depending on how low their census is may determine how much pressure they apply. You may even find he best choice has a waiting list.

As with any decision, there will be a lot to learn about your options. The more facilities you visit, you will realize you have more questions than you thought. Most will invite you to a meal, or even some of the activities. This is a great way to observe them in a more natural setting. If nothing else, you will find some to eliminate. You never know when an emergency placement might be necessary and it will be that much easier if you have at least ruled out some of the choices.

Grandmaofeight Jul 2022
It is much easier to begin a search now rather than wait till there is an immediate need. I placed my parents in an assisted living facility that had 5 levels of care including memory care. We all felt comfort knowing my parents wouldn’t have to go to another facility if the level of care changed.

MeDolly Jun 2022
Your mother is worse than my step-mother who we just moved from AL to MC. Why? Because she is on rapid decline and it is better that she acclimates herself before the shade rolls all the way down.

Perhaps you should trust the people who are clinically trained, it is obvious that there is a significate problem, one that you need to come to terms with and accept.

You seem to be wanting to come up with reasons for not accepting the obvious.

This is not about you, it is about what is best for her, long term.

I understand my brother was like you are, coming up with as many excuses as he could, well, she was in MC for 1 month and said "Thank God you had the common sense I did not". Translated, she is where she needs to be.

Good Luck, make the right decision for her.

Moxies Jul 2022
Lots of good advice. We are now in AL. I had been looking, casually, for several years. First online, then visits, and finally nitty gritty meetings. When it finally became obvious that a move was necessary, it was much simpler to check back with my few preferred places before making a decision. Our place is adequate, probably as good as any in the immediate area, but we came in determined to redefine in a year. We are under a month to month contract, rather than buy in, which permits this. I would say plan for the worst possibility; it can happen quite suddenly.

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